Campaigners are resorting to legislation to guarantee care and support for service users, with the Down's Syndrome Association leading by example, reports Vern Pitt

Campaigners are resorting to legislation to guarantee care and support for service users, with the Down’s Syndrome Association leading by example, reports Vern Pitt

On Susannah Seyman’s desk sits a card from a young girl with Down’s syndrome. Inside, it reads: “Thank you for my house.” The house was the prize from one of Seyman’s more memorable victories using the Human Rights Act 1998 to help children and adults with Down’s secure the support to which they are entitled.

“The little girl was attending primary school but she wanted to go to a secondary school which was miles away,” recalls Seyman, information officer at the Down’s Syndrome Association. The girl could not make it to school and, even if transport could have been arranged, she would not have been able to participate in the school community through after-school clubs.

However, article eight of the European Convention on Human Rights – which the act incorporates into British law – guarantees the right to family and community life. Seyman alerted the housing association that housed the girl and her family, and they were moved.

“That was especially successful because the housing association changed its whole policy on their points system, and rather than looking at a medical model of disability, they now use a human rights model,” Seyman says.

Other victories have included obtaining respite care so that people can maintain a family life and bringing forward medical operations to comply with article three on degrading and inhumane treatment. Seyman says these are two of the rights she most often cites from the act, which binds public bodies such as councils to respect the convention rights.

Seyman says it has proved crucial in helping people with Down’s syndrome access the care and support they need.

Non-aggressive use of act

She is keen to emphasise that her use of the act is not combative and she is not intent on embarrassing councils or social workers. Rather, she says, the legislation is drawn up in such as way as to avoid high-profile court actions and to uphold people’s rights simply and effectively. This is the approach she takes herself: reminding public bodies of their duties rather than threatening legal action.

Her actions may well have saved councils and the NHS thousands of pounds. “We had a chap who needed cataract surgery and he was going to have to wait a year – we got it for him within a fortnight. They were making him a lot more expensive than he needed to be. His care needs trebled when all he needed was basic cataract surgery. It was short-sighted,” she says, pun unintended.

Seyman and colleague Kate Powell, who has Down’s herself, are encouraging more people with the condition to use the act. “I think people should fight for their human rights,” says Powell, who has spoken on the issue at meetings throughout the UK. “Nothing is more important than treating people with respect.” Seyman and Powell also recently contributed to a DVD for the Department of Health to publicise this.

Rights and responsibilities

Rights and responsibilities are abstract concepts that are difficult to explain to people with learning disabilities. “We’re trying to relate the act to people’s everyday experiences by saying things like, ‘people aren’t allowed to lock you in your bedroom’, which they will understand more,” says Seyman. Powell’s grasp of the key concepts is a persuasive advert for other people with Down’s to be more proactive, says Seyman.

“People with learning disabilities have a lot of other people fighting for their rights, like advocacy and campaign groups, so they are just not that interested – they’d rather be talking about EastEnders,” she adds. “Many people grow up with their families fighting for them so they can become passive.”

With council budgets tightening further in the years ahead, Seyman says it is more important than ever to equip people with learning disabilities with the armoury to fight their corner.

Repeal calls

The current debate on whether prisoners ought to be given the right to vote – prompted by a European Court of Human Rights ruling – has revived calls to repeal the Human Rights Act from some Conservative MPs.

Seyman says the problem is that many people do not understand that the law enhances rights for everyone, not just minority or unpopular groups.

“We would be very disappointed if there were all this upheaval when we have a very good tool to help disadvantaged people in tough times,” she says.

It’s difficult to imagine the little girl with Down’s syndrome and a new house disagreeing with that.

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